INDIANAPOLIS—One Indianapolis woman knew something was off when she became pregnant with her second child.
"It was too easy and something didn't feel right," said Shelby Norris.
Having struggled to conceive her first child she was surprised by how quickly this pregnancy happened. Trusting her instincts, she underwent prenatal carrier screening, which revealed she was a Cystic Fibrosis (CF) carrier.
Given that her sister-in-law was also a CF carrier, she encouraged her husband to get tested. When his results also came back positive, they sought guidance from Riley Hospital’s genetic counselors and opted for the Unity Screen, a non-invasive test that assessed their baby's risk. The results confirmed a 9/10 chance that their baby had CF.
Now they want to help other families know about a newer therapy option after having success with their second-born.
The family looked into CF support groups, where they discovered discussions about Trikafta, a medication that had shown promising results in expectant mothers and their unborn babies.
Wanting professional insight, the Norris family consulted their genetic counselor at Riley.
The counselor connected with pulmonologists and the Riley Fetal Center, who had just begun considering this option for eligible patients. After careful evaluation, Shelby was given the green light to begin Trikafta under close medical supervision.
“This is a new opportunity for us," said Dr. Don Sanders, Pulmonologist at Riley. "We're not sure you know exactly how much benefit is going to be."
As the pregnancy progressed, ultrasounds and MRIs showed that the child's possible complications had resolved.
"My job is fetal therapy, whether that includes surgery or just innovative approaches, is to think a little bit out of the box," said Dr. Hiba Mustafa, Director of Fetal Surgery at Riley. "We are going to continue to look at the findings and long-term outcomes, hopefully, to decide if this is truly as promising as we hope it is."
Shelby remained closely monitored, and on September 19th, Piper was born healthy with no major complications—no bowel surgery, no NICU stay, and no skeletal issues.
Though she was found to be pancreatic insufficient, a common CF-related condition affecting digestion, it was manageable. Today, Piper is thriving on her own Trikafta prescription, offering hope for a bright future.
Grateful for the unwavering support of the Riley medical team, the Norris family hopes to encourage others facing similar medical challenges.
“There is so much support and so many advancements happening,” Norris said.
